meeting at sloan kettering...any info???

LaCh

Phoebesnow said:

Lach

I also kNew my fate.  I know more than that.  I do 

 

Last time I saw my neurolgist he gave me this simple memory test.  He picked 5random words for me to memorize, 20 minutes later after a busy appointment (not studying) he asked for the words.  I had a little difficulty remembering one.  He said I was fine. 

 

Also look up peanut butter and altheimers and try the test!  Good luck.

peanut butter

I looked it up. It's controversial at best; many things can cause dimished olfactory function and there's more than one form of dementia, so from what I read, it's not a very useful test (but can cause an unnecessary freak-out in those who try it and fail).  But who knows. Not me, that's for sure. I have lots of questions and more or less, no answers. So who knows.

mp327

LaCh said:

peanut butter

I looked it up. It's controversial at best; many things can cause dimished olfactory function and there's more than one form of dementia, so from what I read, it's not a very useful test (but can cause an unnecessary freak-out in those who try it and fail).  But who knows. Not me, that's for sure. I have lots of questions and more or less, no answers. So who knows.

Cognitive Issues

I think it would be impossible to completely rule in or rule out our treatment as the sole cause for diminished cognition issues.  I am getting ready to turn 60 next week and have read lots of articles about memory loss since my mother was diagnosed with dementia.  As people age, most people will experience some memory issues as a normal part of the process.  I know that my memory is not as acute as it once was.  Is it due to treatment or my age?  I simply don't know.  Another factor complicating that for me is the fact that I was diagnosed with hydrocephalus at the age of 39, which is a condition in which there is too much fluid around the brain.  Let me tell you, when you are 38 years old and begin having memory issues, it's quite scary.  I would go to meetings at work and walk out afterwards, not remembering one single thing that was discussed.  I thought I was losing my mind.  I could not complete the simplest tasks at work, even though I had been doing them for years.  Finally, after a CT scan, I was properly diagnosed and had surgery for a shunt, which returned everything to normal for me.  The reason I bring this up is because another cause of memory difficulties in people as they grow older is NPH--Normal Pressure Hydrocephalus.  Many people are incorrectly diagnosed with Alzheimer's or dementia when, in fact, they actually have NPH.  This is a different condition than what I have, as mine was present at birth, to the best knowledge of my physicians at the time of my diagnosis.  It is referred to as Decompensating Hydrocephalus, whereas the body is able to compensate for the extra fluid for awhile, but as a person ages, the body becomes less able to do so.  That explains why my symptoms did not come on until I was in my late 30's.

The only reason I am sharing this with all of you is to make a point that memory difficulties can be attributed to many different things.  Yes, we all had the same treatment and it's quite possible that the chemo is to blame.  However, we are also all aging and many of us are past the age when the memory begins its normal decline.  So I just think it's impossible to know the exact cause or to blame just one thing.  That's just my take.   

LaCh

mp327 said:

Cognitive Issues

I think it would be impossible to completely rule in or rule out our treatment as the sole cause for diminished cognition issues.  I am getting ready to turn 60 next week and have read lots of articles about memory loss since my mother was diagnosed with dementia.  As people age, most people will experience some memory issues as a normal part of the process.  I know that my memory is not as acute as it once was.  Is it due to treatment or my age?  I simply don't know.  Another factor complicating that for me is the fact that I was diagnosed with hydrocephalus at the age of 39, which is a condition in which there is too much fluid around the brain.  Let me tell you, when you are 38 years old and begin having memory issues, it's quite scary.  I would go to meetings at work and walk out afterwards, not remembering one single thing that was discussed.  I thought I was losing my mind.  I could not complete the simplest tasks at work, even though I had been doing them for years.  Finally, after a CT scan, I was properly diagnosed and had surgery for a shunt, which returned everything to normal for me.  The reason I bring this up is because another cause of memory difficulties in people as they grow older is NPH--Normal Pressure Hydrocephalus.  Many people are incorrectly diagnosed with Alzheimer's or dementia when, in fact, they actually have NPH.  This is a different condition than what I have, as mine was present at birth, to the best knowledge of my physicians at the time of my diagnosis.  It is referred to as Decompensating Hydrocephalus, whereas the body is able to compensate for the extra fluid for awhile, but as a person ages, the body becomes less able to do so.  That explains why my symptoms did not come on until I was in my late 30's.

The only reason I am sharing this with all of you is to make a point that memory difficulties can be attributed to many different things.  Yes, we all had the same treatment and it's quite possible that the chemo is to blame.  However, we are also all aging and many of us are past the age when the memory begins its normal decline.  So I just think it's impossible to know the exact cause or to blame just one thing.  That's just my take.   

cognition

I had the usual memory hiccups prior to tx and attributed them to aging. There was an acute exacerbation and a noticible change in frequency, duration, what I was forgetting and how able or unable I was to recall what I was trying to recall about 6 months post tx. It was an acute change that I noticed. On a whim I googled 5FU and cognitive issues (I say "on a whim" because I was told that there were none) and as it turns out, there's literature, studies from insitutions mostly outside the US and seemingly, if this forum means anything, plenty of people reporting cognitive issues post 5FU. Often, the time of onset is 6 months post tx as it was for me.  With due respect, yes, I had the usual forgetfulness prior to receiving 5FU and it was just something that I noted and shrugged off. This is a different animal all together. I'm told by the person who's going to assess me next week that there's a way to determine what changes are due to the normal aging process and what changes are due to chemo induced deficits in cognition. I'm not sure how that can be; without a baseline, I don't know how one measures change...change as compared to...what? In any case, she said that there's a way to do it, so I'll go hear what she has to say and then do my own research, and make up my own mind. At this stage in my life, I'm skeptical of pretty much everything that I'm told, by members of a community--the medical community-- that I've come to distrust. But we'll see.

mp327

LaCh said:

cognition

I had the usual memory hiccups prior to tx and attributed them to aging. There was an acute exacerbation and a noticible change in frequency, duration, what I was forgetting and how able or unable I was to recall what I was trying to recall about 6 months post tx. It was an acute change that I noticed. On a whim I googled 5FU and cognitive issues (I say "on a whim" because I was told that there were none) and as it turns out, there's literature, studies from insitutions mostly outside the US and seemingly, if this forum means anything, plenty of people reporting cognitive issues post 5FU. Often, the time of onset is 6 months post tx as it was for me.  With due respect, yes, I had the usual forgetfulness prior to receiving 5FU and it was just something that I noted and shrugged off. This is a different animal all together. I'm told by the person who's going to assess me next week that there's a way to determine what changes are due to the normal aging process and what changes are due to chemo induced deficits in cognition. I'm not sure how that can be; without a baseline, I don't know how one measures change...change as compared to...what? In any case, she said that there's a way to do it, so I'll go hear what she has to say and then do my own research, and make up my own mind. At this stage in my life, I'm skeptical of pretty much everything that I'm told, by members of a community--the medical community-- that I've come to distrust. But we'll see.

LaCh

It will be interesting, indeed, to see how that determination is made, or attempted to be made.  Like you, I don't see how that's possible.  Let us know!

LaCh

mp327 said:

LaCh

It will be interesting, indeed, to see how that determination is made, or attempted to be made.  Like you, I don't see how that's possible.  Let us know!

if

If there's anything worth telling, I'll tell it. I go with an open mind (as in, "what do I know?") but low expectations.

sephie

LaCh said:

sephie, wow

 that doc was definitely wrong not to tell you.....i did not even think to ask any questions about cognitive issues....

>>>>>>>I had a whole list of questions for both my medical and my radiation oncologists, and that was just one....  For all the good it did.

 

i still was in a fog and could not believe i had ANAL cancer, of all things....i also was in so much pain all the time , i just went from one appt. to the next like a Zombie....

<<<<<<<<<<Well, don't feel too bad... I'm not the kind of person who does what I'm told, just because I AM told, and strangely, I wasn't freaked out or scared or anything, but they said, "go here," and I went there, "do this" and I did that, and in hindsight, a lot of it was just stupid and unnecessary. And I was thinking pretty clearly, to don't beat yourself up too much over it.

i did not take pain meds because i needed to be able to function by myself.... crazy.....

>>>>>>>not so crazy. I didn't take pain meds either, because I didn't want to deal with the side effects, and held out until the 4th week when I went from "Pain meds? No way," to calling over a weekend and begging for them, and then taking them for the next month or so.

 i agree that NOT to have done the tx is not such a bad choice.....

>>>>> You know, that's one of the best, kindest things that anyone here has ever said to me, and maybe one of the things that resonates the most for me. It's hard to say such things when most people fight tooth and nail to survive and accept any adverse effects that come with the treatments, but I don't feel that way. To find someone--even one someone--who feels like I feel, well... man! That's one of the most helpful things I've heard here, strange as that might seem. 

i did not even get on internet to research this type of cancer until after tx was over.... i was just too tired and in too much pain... and struggling just to keep myself clean, hydrated, and some protein in my mouth each day....craziness.....i still do not know how you did it..... unbelievable!!!!

<<<<<<<<< Well, although it probably wasn't the best decision for me to treat it, once I made that decision, I just.... did it. I'm alone in health and I'm alone in sickness and after a while you just don't even think about it. Also, I have to say that I like my privacy and my solitude, I like being single and alone, so it's not like I was bummed out by being alone. It was inconvenient but not like some major emotional issue. That's not to say that it didn't present some logistical problems because it did, especially as I got sicker and sicker, but... I don't know, you just find a way. One foot in front of the other, that sort of thing. Also, as I've mentioned before, I'm from the suck-it-up school and that's sort of how I do things. I just tell myself, "Oh, come on, just suck it up."  In the 4th week I was no longer able to walk, but before treatments began, I googled every free cancer service I could find, every private organization and came across something called Cancer...something, I don't remember, and they gave me $750 for transportation. I saved it all until the 4th week and when I couldn't walk anymore, or even take the bus or the train, I took a cab to and from treatments. I remember I had to see my gastroenterologist to get some pain suppositories (they didn't help at all, I couldn't even get them in there) and her office is about 5 blocks from my house and I had to take a cab even to there. Cabs 5 days a week for two weeks isn't cheap, but the money I received enabled me to do it. Once you commit to the thing, you just find a way to get it done and that's what I did.

of course, you had no choice other than to just lay down one day and not get up.... your sweet dog would have been sad.

<<<<<<< Like I said, I wasn't scared or in shock or freaked out in any way when I got the diagnosis...except when it came to my dog, and the only time I cried during the entire experience was the day I got the dx and I said, "What about my dog?"  I lost it then. I really did. I wasn't afraid to die. I was afraid to die and leave my dog  with no one. THAT freaked me out.  THAT undid me.  My dog is like a hairy son. I wouldn't love him any more if he carried my DNA. So that undid me, the thought of leaving him with no one undid me. I don't know how anyone reading this will take it (and although I don't want to come off as rude, I don't really care how it's received) but I lost the love of my life, my sun, my moon and my stars eight years ago, from cancer. Since then, I've felt that I was going to die young. I just couldn't shake the feeling, it was with me day and night, night and day, it never left me.  I was expecting a diagnosis like the one that I got, I was waiting eight years for that shoe to  drop and when it finally did, my feeling was, "finally."  I wasn't surprised. I don't have the feeling of impending death anymore. I believe in precognition; I've had these experiences all my life, about myself, about other people, even about strangers or people I barely know. So I sort of felt this coming. Also, the person who I lost to cancer, got it at 58 years old and our lives and life events --many, many of them--were strangely similar. The age of cancer was the same for us both, 58. So it wasn't a huge surprise for me when I got the diagnosis. I was waiting for it. The difference is that he died from it and I didn't.  On another topic, (the topic of cognitive deterioration from chemo) I was speaking to someone tonight in Spain, through Skype, and for the life of me I couldn't think of the verb "to hibernate," not in English, not in Spanish, not for anything, although I was able to remember the verb "to sleep" in both languages. This seems like dementia to me and I swear, if I think I'm sliding into dementia, I'll find a way to make a graceful exit. To be alone and deal with cancer treatments is one thing. To be alone and have dementia is quite another, whether you're at home or locked up in a nursing home and that simply will not happen.

lach, thx

lach,  i do so appreciate your responses to my statements....(i have been at MD anderson for check ups--- all good but nothing to help the side effects).....my cat ( i lost my dog) is my child so i understand about your dog.....so sorry about the love of your life because someone like that is truly very hard to find.....i agree that dementia would be horrific ..... i agree about finding a way to make a graceful exit , if possible..... my DAD always told me that if he reached a point that he could not function,  he would handle it.....i knew what he meant and it did not bother me at all....i could not find him one time ( he lived on 50 acres) so i thought he had handled it but i did find him later down the road....he was a WW2 vet , so they fear nothing..... thx again.....sephie

LaCh

sephie said:

lach, thx

lach,  i do so appreciate your responses to my statements....(i have been at MD anderson for check ups--- all good but nothing to help the side effects).....my cat ( i lost my dog) is my child so i understand about your dog.....so sorry about the love of your life because someone like that is truly very hard to find.....i agree that dementia would be horrific ..... i agree about finding a way to make a graceful exit , if possible..... my DAD always told me that if he reached a point that he could not function,  he would handle it.....i knew what he meant and it did not bother me at all....i could not find him one time ( he lived on 50 acres) so i thought he had handled it but i did find him later down the road....he was a WW2 vet , so they fear nothing..... thx again.....sephie

sephie

sephie, you've always been more than kind, really....  yes, these are complicated issues.... sometimes made more complicated than they need to be but often, inherently complciated. Would I take myself out if I sensed a slow slied into dementia? Yes, in a way that wouldn't burden anyone with cleanup or tying up my affairs and with minimal problems. There really arent many people who would be affected; my sister, maybe, but we're not at all close.  So I understand your dad's thinking. Regarding the appointment with the cognitive doctor tomorrow, I'll post any information that I think might be germaine to other people or helpful in some way, but won't post anything specific to myself, I don't think. After a very short while, I get sick of talking about myself, and talking about all this.  It just gets boring after a while. As for the love of my life...  well, there's a lot and there's nothing to say about that, except that it's the heaviest burden that I bear, and the worst thing that's ever happened to me, by far. But no, there's no need to ever thank me; you're always welcome and your kindness, always, is very  appreciated.